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WASHINGTON — For years, children’s hospitals across the country have faced a conundrum: They
wanted to fight rare diseases but saw too few patients to do statistically valid research on those
diseases.

Now, they say, they have power in numbers.

A bill signed into law late last month will allow children’s hospitals to work together to fight
such diseases. The bill was introduced by Sen. Sherrod Brown, D-Ohio, and co-sponsored by Sen. Rob
Portman, R-Ohio.

“It’s been a national effort for over eight years to bring this to reality,” said Dr. John
Barnard, president of the Research Institute at Nationwide Children’s Hospital, who advocated for
the bill.

He has said in the past that Nationwide has been stymied in doing research on rare diseases
because it doesn’t have a large-enough sample of patients to treat. Under the new law, the hospital
can team with other institutions to perform statistically valid research.

“It’s a powerful way to do research quickly and bring treatment to children much faster than we
could ever do at a single-institution level,” he said. “That’s the real power in the type of model
that’s been proposed and signed into law by President (Barack) Obama.”

The law requires the National Institutes of Health to create pediatric-research consortia
throughout the nation. Each consortium would consist of multiple institutions and would focus on
rare diseases and conditions, or conditions related to birth defects. The consortia would aim to
maximize the impact of the money spent on pediatric research.

“Pediatric-research institutions and pediatric researchers face real financial challenges that
threaten their important work, especially in their efforts to combat and cure rare pediatric
diseases,” Brown said. “But this new law will leverage investments into pediatric research through
enhanced partnerships and data-sharing among research institutions, to the benefit of our children
and families.”